UPDATE (4/2/13)
Good day. Beckett has had a good day. He has spent most of the day sleeping, and when he was awake he was completely calm and happy, for the most part. Despite having a large tube down his throat, he did not seem to be overly annoyed. They even decreased his Versed (sedation) by half because they are hoping to take him off the ventilator some time tomorrow. However, as we have seen multiple times, Beckett’s pleural effusion is detrimental to his breathing. They have not pulled any fluid from his chest tube since they first put it in, so I asked that we not rush to take him off the vent if there still seems to be fluid that isn’t draining out. I would hate to see the tube come out only to go right back in…again. So, they said they would discuss it with the doctor prior to pulling it. We will see what the x-ray shows in the morning.
I love spending quality time with my son. I spent most of his awake time next to his bed holding his hand and talking to him. I rub his feet and legs, and give him lots of kisses. I have yet to go a day without seeing him, and I pray I am able to see him at least a little every day. This is hard with me working, but so far I am making it happen. Yesterday I had a sobering thought. While I did make it down after work yesterday to see him for about half an hour, Beckett was already sleeping when I arrived. Once home, I realized it was the first day he had gone without seeing his mommy. It pretty much brought me to tears. While I don’t think he has the same concept of time, it broke my heart to think he might be wondering where I am. It is so hard to be away from him for such long periods of time, so I pray for continued strength and understanding that this sacrifice is what is best for him.
We are continuing to trust in the Almighty Savior for Beckett’s complete healing. While this journey he has laid before us is hard every single day, it is clear God has things to teach us that we could not have learned any other way. So I am grateful in my circumstances. Jonny told me the other day that I will always be able to look at Beckett and see how God used him to change my life. He is my constant reminder that God is truly faithful. And he will be to the end.
— with Jonathan Rupp at St. Vincent’s Womens Hospital.
Heart of Beckett 
Praying for you, Leah, and your husband and Beckett every day…many times a day. I’ve been through difficult times with my oldest son being gravely ill when he was just a baby and needing emergency surgery, and my husband being ill for 10 years before losing him. I understand what it is like to not be able to be there with your loved one when that is the only thing you so desperately want to do, and the only place you want to be. Keep hanging in there and well keep praying for God to give all of you the courage, faith and strength to persevere day by day and in the times when it may be minute by minute. So glad for Beckett’s good day today with you. Go Beckett!
So happy that Beckett had a good day. You must treasure the good days. Leah, Beckett already knows his mother’s love. He has basked in your love for the last 3 months. And you are right that he doesn’t quite know time so when he sees you at any time he knows he is enjoying his mother’s love. No one can replace that for him. So keep up the strength and patience you have already shown. God will support you and love you. I continue to pray for Beckett’s healing and strength and peace for you and Jonny.